Agent Orange
and Spina Bifida

What is spina bifida? Why are Vietnam veterans concerned about it?

Spina bifida is the most frequently occurring permanently disabling birth
defect. It affects approximately one of every 1,000 newborns in the United
States. Neural tube defects (NTD) are birth defects that involve incomplete
development of the brain, spinal cord, and/or protective coverings for these
organs. Spina bifida, the most common type of NTD, results from the failure
of the bony spine to close properly during the first month of pregnancy.
(Anencephaly and encephalocele are less common types of NTDs). In severe
cases of spina bifida, the spinal cord protrudes through the back and may
be covered only by skin or a thin membrane. Some Vietnam veterans have children
born with spina bifida. While Vietnam veterans are now moving out of the
age category usually associated with having children, it is anticipated that
some future births will occur and that some of these children may have birth
defects, including spina bifida. Some research efforts have suggested that
there may be a relationship between exposure by Vietnam veterans to Agent
Orange and/or other herbicides used in Vietnam and the subsequent development
of spina bifida in some of their children.

What can be done for children with spina bifida?

Surgery to close the infant’s back and to protect the spinal cord
is generally performed within 24 hours after birth to minimize the risk of
infection and to preserve existing function in the spinal cord. Because of
the potential paralysis resulting from the damage to the spinal cord, people
born with spina bifida may need surgeries and other extensive medical care.
Spina bifida is also associated with bowel and bladder complications. Many
individuals with spina bifida also suffer with hydrocephalus, fluid in the
brain. Hydrocephalus is controlled by a surgical procedure, which relieves
the fluid build up by redirecting it to the abdominal area. Because of medical
advances, most children born with spina bifida live well into adulthood.

What did the National Academy of Sciences (NAS) conclude about the relationship
between exposure to herbicides and spina bifida in its 1993 report, entitled
Veterans and Agent Orange - Health Effects of Herbicides Used in Vietnam?

While there were several references to spina bifida in this 832-page report,
the condition was grouped with all other birth defects. The NAS reviewers
concluded that there is “inadequate or insufficient evidence” to
determine whether an association exists between exposure to herbicides used
in Vietnam and birth defects among offspring.

What did the 1996 NAS update conclude about spina bifida?

In 1996, the NAS commented that published results of the analysis of birth
defects among the offspring of the Operation Ranch Hand (the Air Force unit
responsible for most of the Agent Orange spraying) personnel “suggest
the possibility of an association between dioxin exposure and risk of neural
tube defects.” The NAS reviewers noted that a number of studies of
veterans “appear to show an elevated relative risk for either service
in Vietnam or estimated exposure to herbicides or dioxin and neural tube
defects (anencephaly and/or spina bifida) in their offspring.”

NAS further noted that while the Centers for Disease Control (CDC) Birth
Defects Study revealed no association between “overall Vietnam veteran
status” and the risk of spina bifida or anencephaly, the CDC herbicide “exposure
opportunity index,” based on interview data, indicated an increased
risk of spina bifida in the children of Vietnam veterans who had high index
ratings. There was no similar pattern of association for anencephaly. The
CDC Vietnam Experience Study indicated that more Vietnam veterans reported
that their children had a central nervous system disorder (including spina
bifida) than did non-Vietnam veterans who participated in the study.

The NAS observed that all three of these epidemiological studies (which
are of the “highest overall quality”) suggest an association
between herbicide exposure and an increased risk of spina bifida in offspring.
While the NAS took note of the weaknesses in each of these studies, the NAS
report concluded that there is “limited/suggestive evidence” of
an association between exposures to herbicides used in Vietnam and spina
bifida. On the other hand, the NAS found “inadequate or insufficient
evidence to determine whether an association exists” between exposure
to the herbicides and “all other birth defects,” that is, birth
defects other than spina bifida.

What was VA’s response to the NAS finding regarding spina bifida?

While VA’s Secretary Brown could easily add peripheral neuropathy
and prostate cancer (two other “limited/suggestive evidence” conditions
cited in the 1996 update) to the list of conditions recognized by VA for
presumption of service connection for Vietnam veterans based on exposure
to herbicides, VA lacked the authority to provide benefits to non-veterans
(including veterans’ children) based on the possible relationship between
those individuals’ disabilities and a veteran’s service.

On May 28, 1996, President Clinton announced that VA would send to Congress
proposed legislation that would provide an “appropriate remedy” for
Vietnam veterans’ children who suffer from spina bifida. On July 25,
1996, Secretary Brown sent to Congress a draft bill that would provide for
the special needs of these children through the provision of comprehensive
medical care, vocational training, and monetary benefits (monthly allowance).
On July 28, 1996, the legislation was introduced in the Senate and House
of Representatives. In September, Congress approved a similar version of
the spina bifida legislation with an effective date of October 1, 1997, as
part of the VA FY1997 appropriations bill. It became Public Law 104-204 on
September 26, 1996, when President Clinton signed it.

In May 1997, proposed rules regarding monetary allowance and healthcare
for Vietnam veterans’ children with spina bifida were published in
the Federal Register. (See 62 Fed. Reg. 23724 and 23731, May 1, 1997). In
July 1997, the proposed rule regarding vocational training and rehabilitation
for Vietnam veterans children with spina bifida was published in the Federal
Register. (See 62 Fed. Reg. 35454, July 1, 1997). The three final rules,
effective October 1, 1997, were published in the Federal Register in September
1997. (See 62 Fed. Reg. 51274, 51281, and 51286, September 30, 1997).

On May 24, 1996, VA announced a “solicitation for applicant to establish
a research center for epidemiological, clinical, and basic science studies
of environmental hazards and their effects on reproductive and developmental
outcomes.” On November 14, 1996, VA announced that the Louisville VA
Medical Center was selected as the site of this center.

What benefits/services are now available for Vietnam veterans’ children
with spina bifida?

Monetary allowance. Public Law 104-204 provides that the monthly monetary
allowance for any Vietnam veteran’s child with spina bifida be based
on the degree of disability suffered by the child. The law required VA to
establish three levels of disability for this allowance. Under the final
regulations, the stipend or monthly monetary allowance ranges from $232 to
$1,373 (rates effective December 1, 2002), based on the degree of disability
suffered by the child. This allowance is subject to annual cost-of-living
increases and will not be counted as income in any federal means-tested programs.
Vietnam veterans’ children are eligible for the monthly allowance throughout
their lives, regardless of their age or marital status. VA regulations defined
the three levels of disability as follows:
· For Level I, the least severe level of disability, the child is able
to walk without braces or other external support, has no sensory or motor
impairment of arms, has an intelligence quotient (I.Q.) of 90 or higher, and
is continent of urine and feces. The monthly allowance is $232;
· For Level II, the intermediate level, none of the child’s disabilities
are severe enough to be evaluated at Level III, and the child can walk, but
only with braces or other external support, or has sensory or motor impairment
of arms, but is able to grasp a pen, feed him or herself, and perform self
care, or has an I.Q. of at least 70 but less than 90, or requires drugs or
intermittent cauterization or other mechanical means to maintain proper bowel
function. The monthly allowance is $804.
· For Level III, the most severe level, the child is unable to walk
or has sensory or motor impairment severe enough to prevent grasping a pen,
feeding self, and performing self care, or has an I.Q. of 69 or less, or has
complete urinary or fecal incontinence. The monthly allowance is $1,373.

A child who meets any one of the criteria in a level is rated at that level.
For example, a child who meets all the criteria for level one, but who has
total incontinence (Level III criteria) will be rated and paid at Level III.
About 70 percent receiving benefits under this program are at Level III.

Health Care. Under the final rule for health care, VA provides Vietnam
veterans’ children who are suffering from spina bifida with health
care services VA determines are needed for the spina bifida or any disability
that is associated with spina bifida. This is not intended to be a comprehensive
insurance plan and does not cover health care unrelated to spina bifida.
Under this final rule, health care may be provided directly by VA, by contract
with an approved health care provider, or by other arrangements with an approved
health care provider. VA may inform spina bifida patients, parents, or guardians
that health care may be available at not-for-profit charitable corporations
(such as Shriners hospitals) for children under age 18. In March 1997, VA
and Shriners Hospitals for Children (SHC) reached an agreement for SHC to
care for Vietnam veterans’ children with spina bifida at no charge
for outpatient or inpatient care for children up to the age of 18 with this
condition. VA reimburses non-SHC facilities providing care to children older
than 18 and whose parents or guardians choose not to receive their care at
SHC. VA also reimburses non-SHC facilities for necessary medical services
not offered by SHC and covers transportation costs for patients and their
parent or legal guardian to an SHC unit or any outside facility required
for treatment of the patient. SHC currently treats about 5,000 children with
spina bifida, the largest number of such patients treated by any hospital
system in the world.

Vocational Training and Rehabilitation. VA provides an evaluation to a
Vietnam veteran’s child who VA has determined suffers from spina bifida.
If this evaluation establishes that it is feasible for the child to achieve
a vocational goal, VA will provide the child with the vocational training,
employment assistance, and other related rehabilitation services that VA
finds the child needs to enable the child to achieve a vocational goal, including
employment. Vocational training program for a child with spina bifida must
consist of such vocationally oriented services and assistance, including
such placement and post-placement services and personal and work adjustment
training, as VA determines are necessary to enable the child to prepare for
and participate in vocational training and employment. Training may include
a program of education at an institution of higher education if VA determines
that the program of education is predominately vocational in content.

What did the NAS conclude about spina bifida in subsequent updates?

The 1998 report concludes that new occupational studies (Canadian farmers/Norwegian
farmers and a case control study of parental occupation and spina bifida
incidence in the Netherlands) all indicate a higher incidence of this condition
among the children of males exposed to herbicides/pesticides. This update
stated that “There is no changes from Update 1996. In Update 1996,
there was limited/suggestive evidence of an association between exposure
to the herbicides considered in this report and spina bifida.” In 2000,
the NAS concluded that the “available scientific literature provides
limited/suggestive evidence of an association between exposure to ….herbicides
(considered in this report) and spina bifida in offspring.” In 2002,
the NAS reported that there were “no new relevant studies” on
the association between exposure to herbicide and spina bifida and that the
evidence is still “limited or suggestive” of an association.

Where and how does someone get these benefits and services?

Approval of monetary support, health care, and vocational training is based
on eligibility determinations made at VA regional benefit offices. Prospective
beneficiaries must first complete an application for benefits. They should
contact the nearest VA regional office toll-free at 1-800-827-1000.

Are there benefits available for children of Vietnam veterans with
birth defects other than spina bifida?

There are benefits and services similar to those described above available
for the certain disabled children of women Vietnam veterans. For information
about these benefits and services, see Agent Orange Brief, D1, or contact
the nearest VA regional office at 1-800-827-1000.

Where can a veteran get additional information about spina bifida?

Some information regarding spina bifida and related matters can be obtained
at VA medical center libraries, in other medical libraries, from the Environmental
Health Clinician at every VA medical center, or from the Environmental Agents
Service (131), Department of Veterans Affairs, 810 Vermont Avenue, N.W.,
Washington, DC 20420. Non-government organizations, such as the Spina Bifida
Association of America (SBAA), Easter Seal Society, and the March of Dimes,
also have a great deal of information. The SBAA is located at 4590 MacArthur
Blvd., Suite 250, Washington, DC 20007-4226. The toll-free telephone number
for SBAA is (800) 621-3141. The e-mail address is sbaa@sbaaa.org. The website
is www.sbaa.org/.

Where can a veteran get additional information about Agent Orange – related
issues?